11 months later..Magic

11 months later..Magic

From the moment you entered this world,

with your blue-tinged fingers and toes,

God instilled life into you.

He gave you the strength to breathe,

to cry, and to know when you were hungry.

The ability to experience pain,

but also comfort and joy.

The courage to speak ,

through your bold dark eyes,

and your slow twitching head,

when you got so mad.

The ability to know love,

on such a deeper and powerful level.

Your body responded so well to touch,

and to voices that you recognized.

You also loved to be held all the time,

and cuddled up close to someones neck,

in the knee-chest position.

Through the many trials and tribulations,

you continued to defy all odds placed against you.

You created a new image for Trisomy 13 babies,

and you showed people to look deeper than your “label”.

You showed me how to take my label of a “nurse” off (at times),

and realized what a precious gift from God I had in my arms.

You were the rock,

when everything was falling apart,

and you somehow drew our family closer than ever before.

The day you left to go be with your brother,

was unlike no other.

I have seen patients pass away before,

but nothing like yours.

You were in my arms,

and I never wanted to let you go.

Yet, it was like pure magic.

Spirit drifted out of your body,

and I all of the sudden

got this overwhelming feeling

that you were gone.

That’s the moment,

your Daddy and I knew,

life would never be the same.

11 months have passed,

yet it still feels like it was yesterday.

We will miss you forever Rochelle Elaine Johnson. 11/6/15-1/7/15


 ©2015 Sheridan Johnson @Journey with the Johnsons. All Rights Reserved.

One more time

One more time

Have you ever just wanted to do something

one more time?

Take me back to the January 7,

to when I fought so hard to get my own chair,

as uncomfortable as it was, just hold her.

Take me back to the colors of the room,

or the pictures on the walls.

To the sounds all of the nurses, doctors, therapists,

and all of the medical personnel always around.

To the noises from my mom and Shane.

I would want to hear the vital signs monitors again,

even as loud and annoying as they can be.

I would want to study her telemetry,

 and see what rhythm she was in.

I want to study her oxygen levels,

her nasal cannula, and the dressings on her face.

I want to look at her NG tube again,

and notice the true beauty in that tiny tube.

I would want to study every little thing about her,

talk to her until she falls asleep, hear her cries,

change her diaper, and dress her one more time.

I want to open the windows, and see the outside,

because on that day, I had never noticed the weather.

I didn’t get to see the vibrant sun outside,

until it was time to say good-bye to her and walk away,

through those black, sliding entrance doors.

It was beaming so bright,  yet I felt so cold and hollow inside.

If there was one day last year, that I could re-live,

it would be the day I had to say good-bye

to my two month old baby girl.

If I could have told her one last thing,it would be,

that I hope she knows how much she was loved.

I would tell her that mommy and daddy would trade spots,

in a heartbeat, just to give her a full, long, vibrant life.

I would tell her that she has, hands down,

the best biggest sister ever.

I would tell her, in my final words,

that God will take care of her, better than I ever could.

If I could choose any day in the last 12 months,

It would be to spend one more day with Rochelle.

Why? 8 months later…

I was asked the question on why I blog.. and here is the answer.  I blog because I am the voice for my children who did not get to live a full life and I am here to spread the word about Trisomy 13 and 18 and share their lives with others through the internet.  I blog because I love to write and it’s a passion of mine to connect with other moms/people out there who have the same interest as me, and allow me to connect with them on a deeper level.  I blog because this is “my thing”.  As a wife, mom, daughter, sister, etc., I tend to lose time to allow myself to find something that I enjoy doing.  I love to do this, and really want to grow my blog this year, and I am excited for all of my new followers, as well as all of you who continually to read my blog daily.

This question got me thinking about Rochelle’s 8 month anniversary since she passed away.  I can’t believe so much time has passed, yet it still feels so fresh in my mind.  I can finally say that talking about her life story doesn’t have me in tears (though I am not sure if this is normal), but I do find that I am more emotional with other aspects in my life.  I am still unable to handle books/movies/tv shows that have anything to do with a baby dying, but I am able to handle facing my biggest fears in my professional environment by having to walk down the same hospital ER where Rochelle was, and transferred to floor two.  It was so surreal for me to be there with my patient and her mom, knowing it was not a life or death situation like it was for me and Rochelle.  It has changed me as a person, and I feel like I am a better mom/nurse/friend and just overall person because of what we went through with Rochelle.  Losing a baby is never easy, it is not something that I would wish upon my worst enemy, but knowing that God has a purpose and a reason for us here on this Earth that has yet to be completed, makes it a little bit easier to appreciate the time we have here, before I get to join my children in Heaven.

This month, I wanted to do something I haven’t done in a while.  I opened up her memory box that I saved all of her precious belongings in, shortly after she passed.  I thought I would be a mess going through and opening the box, but God gave me the strength and calmness that I needed in that exact moment, to feel such joy when I was looking at these items over again.  Her feeding tube was something that I will never forget, and having majority of her care be based around that, made it such a sweet thing for me to have forever, and I am so glad I saved her last one she had at home.  Looking back, every single one of her outfits were special and so meaningful, and I truly wish I would have saved more.  I was in such a dark place during that first week of her passing, that I didn’t want to look at anything that resembled her stuff.

This box is so powerful and will always remind me to live, laugh, and love.  I hope you enjoy these pictures as much as I did, and I hope you all know how much Rochelle loved each one of these items.

Her precious box
Her precious box
Her first bath brush and my wristband from her birth!
Her first bath brush and my wristband from her birth!
Her favorite paci's
Her favorite paci’s
They gave us this in the NICU and I loved it!
They gave us this in the NICU and I loved it!
Her daily items.  Feeding bag, hand splints, thermometer, mittens, PH test strip, feeding tube
Her daily items. Feeding bag, hand splints, thermometer, mittens, PH test strip, feeding tube
Newborn diaper! :)
Newborn diaper! 🙂
ER gown
ER gown
Some of her favorite socks, and the cute sock pet someone made her!
Some of her favorite socks, and the cute sock pet someone made her!
This used to be on her car seat!
This used to be on her car seat!
Her tutu for monthly pictures and one of my favorite pants she had!
Her tutu for monthly pictures and one of my favorite pants she had!
Some of her favorite bows, headbands, and hats
Some of her favorite bows, headbands, and hats
Her daily schedule.
Her daily schedule.